Wednesday, February 22, 2012

We are back in the Ronald McDonald house

I think the biggest problem with Olivia is she has to wear clothes throughout the day. When everyone sees her cutely dressed in her sleepers (British translation: baby grows) they see this cute perfect baby. It is hard to imagine anything could be wrong with her. It is only when you pop open her little sleeper and see her long scar right in the middle of her chest that someone would realize. On a side note: I have a feeling her chest scar is going to be very inconspicuous but the scar where she had a chest tube drain might be what she is most self conscious about. I love worrying about what she'll think about her scars when she's all grown up! Continuing with this blog entry: unlike 40% of HLHS babies at CHOP, Olivia is able to bottle feed and does not require a NG-Tube (nose feeding tube), or G-Tube (stomach feeding tube). She is a pink skinned beautiful little girl except when she turns purple as I scramble to warm or prepare a few last minute bottles. She doesn't have the obvious visual cues a child with cancer, or a child with several casts on their body would have. All Olivia has is a ticking time bomb in her left upper chest that could send us to the hospital to have an emergency Glenn heart surgery at any moment. The less dramatic truth is that everything is checking out fine at the doctor appointments and she should make it to her surgery on March 16th. Keeping in mind Olivia's biggest problem mentioned above this is what transpired and was finally corrected yesterday. I was told in the morning that we would need to move to a host family house, or find another place I could stay. Olivia wasn't being seen by a doctor twice a week so she didn't meet the Ronald McDonald criteria. The whole idea completely caught me off guard and I was not on top of my game to fight back at the time. I called Melanie as I desperately tried to make a plan, I think we would have ended up staying with the Zapalacs who live about an hour away, but I was able to talk my way back into the house. We do actually have her seen twice a week. In lieu of a second doctor visit a week she is seen by a home health nurse and that took the place of 2 visits a week. They double checked with our nurse practitioner who manages Olivia's interstage care and we were allowed to stay in the house. It was a very stressful, but thankfully everything is okay now! Back to just worrying about Olivia and her daily routine. On a side note, the pressure was being applied because they have 11 families waiting to get into the house in hotels paying $50/night. I just remember back to when Melanie first arrived here. She was pregnant and had to call the house everyday at 10am to try and get a room. After about 2 weeks of being in Philly we finally got a room at the Ronald McDonald house. Now we just wait and see if there are any repercussions from the letter we sent to the corporate office. We felt like it was our final plea before we found out that we could stay.


  1. I think being alive will be well worth the scars. These can be hidden but being alive is much more important so she can be with you.

  2. Xavier had a pretty nasty scar where his chest tube and pig tail drains were. I rubbed them every night with olive oil (once they were healed) and now you can barley see them.


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